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Friday, July 15, 2011

angels + the power of prayer

im not really sure how to write everything i want/need to... i dont even know i really understand how i feel at this moment in time, but i felt like i needed to write something... mostly for myself, but also for everyone who has been so supportive with their emails, texts messages, thoughts, and prayers who may or may not understand what exactly is going on. for anyone who has ever gone through any sort of family medical emergency, you know how much it means for even the littlest bit of hope. i truly appreciate everything you all have sent me more than any of you will ever know.

a lot of people have been asking questions, seeing friends of theirs asking for prayers for me and my brother in law, so i thought this might help answer some of them and allow you all a little deeper into my world right now. if i cant be honest on this blog, i wouldnt have it in the first place.

back in 2006, i started taking classes while i waited to get into nursing school. i was currently doing social work with teenagers in the juvenile justice system and really, i just couldnt do it anymore. i knew it was a good place for me when i had started doing it, but long term it just wasnt going to be something i could do for the rest of my life. i needed to help people, that i did know. so i felt nursing was a better choice for me.

shortly after starting school (quite literally a week into it), i met my husband... pounding beers around a beer pong table in the basement of his fraternity house. class class class. our relationship continued to grow throughout the next few months, and i soon met his family. for a brief moment, i spent some time with his brother, aaron. i learned he had a lung disease called "cystic fibrosis", and had already had a double lung transplant. ty had already told me about the transplant shortly after dating, but the whole story was complete once i met aaron.

aaron was diagnosed with CF within the first 3 months of life. he was in and out of the hospital throughout his childhood for this treatment and that treatment, constant issues with his breathing, build up of mucus that he couldnt get out with normal coughing, etc. ty, as a younger brother, was always sticking up for aaron... ty now standing 6' 7", aaron a much smaller body frame and only 5'10", he is quite literally the "big(ger) brother". growing up, aaron was constantly bullied by other classmates for being so small, and ty really played the role to make sure aaron was protected. but aaron still showed he was the real big brother... he once steered tys tricycle straight into a tree and then told ty the doctors were going to stick a huge needle into his eye when he went to get stitches in his forehead. one year he got tys tooth brush ready before bed for a whole month prior to april 1st so that on the night of april fools day he went up and put garlic paste on the brush. anyone whos had an older brother knows aaron fit the role pretty well.

aaron was once bigger than ty...

but it didnt last too long

(holy huge head)

cystic fibrosis is a progressive disease, where thick, sticky mucus builds up in the lungs. overtime the body just cannot absorb the mucus, the body cant cough it out, it takes over the areas where oxygenation and gas exchange takes place, causes infection in those areas, and essentially the lungs become unusable. early detection of this genetic disease is essential in order to start on proper medications, and in the state of Maine it was recently made a law that every baby born is tested before they leave the hospital. both the mother and father must be a carrier of the CF gene in order to have the 25% chance of their unborn child to have CF, so you can also get tested before having a baby as well.

in 2003, aaron needed a double lung transplant. ty went out on his own and got his blood type/matching capability checked. he was a perfect match. a fraternity brother of ty & aarons dad heard what was going on and also checked out to be a perfect match. they both offered to be live donors for aaron. in december, all three men went into surgery. as they took out tys right lower lung lobe (your right lung is made of two lobes, your left lobe three), his body went into shock on the operating table. his heart was stopped for almost 4 1/2 minutes. they shocked him twice. finally the doctor stuck his hands inside his chest and manually pumped his heart until it started up again. post op his lung collapsed twice. they always say the donor typically has a tougher time in surgery than the recipient.

and just like that, aaron had two new lungs. a new chance at life.

fast forward to 2007. aaron developed pneumonia and then got the flu on top of it. his body is already fairly weak and extremely immunocompromised as it is, so even a cold or the flu that you and i can fight pretty easily, is very difficult for aaron to fight. he was rushed from the hospital in bangor down to mass general in boston and was intubated/put on a ventilator (breathing machine). ty and i packed up and headed down to the hospital (i was in such a blurred mental state... i packed my anatomy book, two pairs of socks, a pair of sweatpants, a hooded sweatshirt, and my tooth brush. no wallet. no underwear. to this day i still havent lived this down). we stayed with him for over a week until he was able to be taken off, but the interim was very very painful. since i was just getting into the nursing program i was very interested in the whole picture, what was going on with his body, with all the meds, and especially with the machines. i watched the respiratory therapist manipulate the vent, explain what it was doing and why. i was intrigued.

aarons condition improved and he was able to fight off the infection. his left lung was in need of replacement, while the right lung seemed unscathed. i went back home and sat with my anatomy & physiology teacher one day after class and told her about why i hadnt been in school, and i mentioned that i was interested in the respiratory program the school had as opposed to the nursing route i was going through. my teacher, jane, told me she was one of the 3 respiratory professors at the school. was this a sign?

i had no idea what all went into respiratory. i knew aaron needed a new lung and i saw one of the respiratory machines that were used, yet on that day i went to admissions and applied to be in the upcoming class for respiratory therapy. i didnt tell anyone except my mother that i did this.

i was accepted into the RT program that summer (2007), and started in september. aaron had another lung transplant in january of 2009, and i graduated that following summer and started working right away. i can honestly say that i really love going to work every day. sure i have my bad days, but i know i am there to help my patients BREATHE. its one of the most important life functions, and ive seen first hand on someone i have grown to love how important it is to be able to do something that the majority of people take for granted.

on this past monday night, we got a phone call saying aaron wasnt doing well. he had been in the hospital for a few weeks fighting an infection the doctors couldnt find. his breathing had gotten increasingly difficult and his oxygen requirements were increasing. they had put him on bipap (a machine that helps with breathing... it doesnt breathe for you but allows you to work less... it also helps to push fluid out of your lungs as well as help to get rid of extra carbon dioxide that builds up in your body when you cant effective breathe it out on your own). tys dad started driving down (a 15 hour drive from maine to north carolina), and ty went with him. i had to go to work. over the course of the day aarons carbon dioxide level continued to rise (normal is 35-45, his got up to the 70's), and the bipap wasnt working to get rid of it. intubation and a vent were the next, and only, step.

aarons mom and fiance had gone home to get a few hours of rest, and aaron told the doctors he refused to be intubated until they could get back to the hospital. debra and kellie rushed in and the doctors showed them aarons recent CTscan compared to the one a week prior... the left lung was almost completely useless, the right lung, tylers lung, the strong/"go to" lung, was now, for the first time in 7 years, beginning to reject. with a carbon dioxide level in the 70's and climbing, they needed to intubate. but ty and his dad were within an hour of the hospital, so they doctor said they would wait so they could talk to him. essentially, maybe, to say goodbye.

i got home from work tuesday and bought a one way ticket to leave in the morning. i specifically made sure i packed underwear this time, but i had no idea what else i needed. i think i cried more from tuesday evening to wednesday morning than i have in the past 10 years. i went through 4 of the 5 stages of grief in about three hours. anger, depression, denial, bargaining.... over and over and over. praying to God that he was strong enough to get through this, although i knew that might not be the case.

i figured i would get super ultra searched at the airport, having bought a one way ticket less than 12 hours before leaving... but they only grabbed my hot pink duffle bag and searched that. how'd ya like my 12 pairs of undies old TSA man? i never carry cash... ever. but i knew my father in law would have been pissed had he knew i traveled without any, so i got $40 out of the atm. i knew i should probably eat something to soak up the 5 beers i downed in about 25 minutes when i got home from work so i grabbed a bagel and a water at the airport. the total came to $7.04... i handed the lady a $20 and 4 pennies. she said "today is the 13th day of july and i will give you 13 dollars in change. may you have much luck on this day." little did that lady know just how much luck i needed indeed. everything happens for a reason.

until i got to north carolina i had no idea what to expect. my stomach hurt so bad, just thinking about everything. i knew i needed to comfort my husband, and needed to be strong for him... but i was just in shock myself. but when i got to him in the baggage claim of the airport... he was smiling. it was then i learned that aaron was awake. he was not in the medically induced coma. his labs were looking good. his oxygen was looking good. this was not at all what i was expecting, and i felt much relief.

when i got in to see aaron, we brought him a white board so that he could communicate with us... and off he went. writing up a storm, and acting like the same old aaron we know and love. it was like 100 pounds was lifted off my chest all at once, just seeing him smile. lucky #13 was right. over the course of the day he grew tired just from all the interaction with people, and they let him rest again over night on the vent, but when we got back in on wednesday morning the respiratory therapist came in and kicked us out... cuz he was going to take the tube out/take aaron off the ventilator. what?!!!

within 30 minutes, we were back in his room and he was talking to us. it was amazing to hear his voice. overnight that night and last night they put him back on the bipap just to assist him in resting and give his lungs a little rest, but his oxygen has been getting better, his carbon dioxide level is at 44 today, and his chest xray has showed a bit of improvement. the emotional roller coaster from tuesday to now has been crazy, but the power of prayer has been so great. aaron is a fighter. he loves his life, lives it to the fullest, and it shows.

as i write this aaron is still in the intensive care, but he was up for a walk earlier today, and hes currently playing blackjack on kellies kindle, while watching the british open. i dont think were out of the woods just yet, but were hoping for him to be moved to the step down unit soon (which i kinda think is backwards... i would think getting out of the ICU would be a step UP... but i dont make the rules. although i often think i should). no one is still sure as to what caused this sudden episode. there could be an infection somewhere that they still cant find. but regardless, in this moment things are looking good. we are all full of hope and so much love. i cant stress enough how amazing the support has been from everyone around us, and we are all so greatful. i feel so blessed to have met aaron and the sterling family, and now to be a member of their family as well. please continue to keep aaron and his family in your thoughts and prayers.

sam sent me this video on tuesday, and i cant help but cry every time i hear it. aaron really is tylers biggest fan and greatest hero... they have been best friends, and they always will be. ty has truly given aaron the gift of life. aaron is definitely an angel in waiting, but his wings arent ready quite yet.

Danielle, I am so so sorry that you are going through all of this and praying for you. I'm back and catching up on blogs and this just made my heart break for you and your family. Hang in there! We're all praying for you.